Catherine Barrett, Pauline Crameri, Sally Lambourne and JR Latham report on the results of their ground-breaking research into the experiences and needs of lesbian, gay, bisexual and trans (LGBT) Australians living with dementia.
The experiences and needs of lesbian, gay, bisexual, trans and intersex (LGBTI) Australians living with dementia have not previously been researched. This can be attributed, in part, to the invisibility of older LGBTI Australians. Many have lived through a time when their only protection against discrimination was to make themselves invisible (Barrett et al 2014a). Disclosure could result in imprisonment, enforced medical ‘cures’ and the loss of employment, family and friends (Barrett et al 2014a; Barrett 2008).
These historical experiences are not attached to a particular age cohort. Rather, as described by Faulkner (1951) “the past is never dead. It is not even past”. Indeed, LGBTI histories provide important context for understanding the experiences of LGBTI people living with dementia, regardless of their age.
Recently, the Australian Government recognised this invisibility and the importance of challenging approaches that assume all people are heterosexual and not trans (Department of Health and Ageing 2012). The 2012 Living Longer Living Better reforms resulted in an amendment to the Aged Care Act (2012) recognising older LGBTI people as a Special Needs Group (Crameri et al 2015). That same year the then Department of Health and Ageing (DoHA) developed a National LGBTI Ageing and Aged Care Strategy (DoHA 2012). The following year an amendment to the Sex Discrimination Act (2013) was made, providing protection against discrimination on the basis of sexual orientation and gender identity – including in the provision of aged care services (Crameri et al 2015).
These reforms have led to significant interest in the experiences and needs of older LGBTI people and LGBTI people living with dementia. Indeed the strategy makes explicit reference to the importance of ensuring that dementia services are inclusive of and responsive to the needs of LGBTI people (DoHA 2012, Goal 2).
These reforms highlight the need for research into understanding the experiences and needs of LGBTI people living with dementia.
Addressing the gap
To address this gap, two studies have been conducted by the Australian Research Centre in Sex, Health and Society (ARCSHS) at La Trobe University.
The first, The LGBTI Dementia Project, involved a partnership with Alzheimer’s Australia to explore the experiences and needs of LGBTI people living with dementia. The project was supported by an advisory group of Alzheimer’s Australia representatives from most states and territories. This project’s philosophical approach was aligned with Goal 5 of the National LGBTI Ageing and Aged Care Strategy “to empower older LGBTI people as self-advocates and experts to be consulted about their own ageing and aged care needs and circumstances” (DoHA, p16).
The second study, The Trans Ageing and Aged Care Project, was conducted in collaboration with trans organisations in Australia including the Gender Centre, Transgender Victoria and FTM Shed (the latter is a Melbourne-based support group for trans men and their allies). The project aimed to document trans people’s experiences of ageing, and their perceptions of aged care services.
Both studies took place in 2014-2015 and were approved by La Trobe University’s Human Research Ethics Committee. In-depth interviews were conducted with 32 LGBT people. Unfortunately, no self-identified bisexual, trans or intersex people were recruited for The Dementia Project. Participants were aged from 47 to 79 years. Three of the participants with dementia were living in residential aged care and others were receiving in-home support.
In the first study, 10 interviews were conducted with 17 participants. Of those, seven included a person living with dementia and their intimate partner; one was a person with dementia without a partner; and two were same-sex partners of recently deceased people with dementia.
In the second study, 15 interviews were conducted with trans people, two of whom had dementia. Interviews were also conducted with six people from five aged care services after they contacted the research team to discuss the care needs of trans clients. Service provider interviews included two residential aged care service providers and one psychogeriatrician who were providing services to trans people living with dementia.
The interviews were audio recorded, transcribed and participants were invited to verify and de-identify their transcript. Thematic analysis of the data from interviews with LGBT participants was conducted to identify common themes and was considered alongside the perspectives of service providers.
Results and discussion
The following six key themes relating to dementia were identified from the two studies and are discussed in this article: the effects of dementia on sexual orientation and gender identity; discrimination; disclosure; intimate relationships; social connection; and substitute decision making.
The effects of dementia on sexual orientation and gender identity
The impacts of dementia on sexual orientation were explored and participants were invited to respond to the suggestion that lesbian and gay people ‘straighten up’ or ‘become heterosexual’ when they develop dementia. Against this view, lesbian and gay participants described the constancy of sexual orientation.
For example, Greg, a 77-year-old gay man with dementia, said he was “naturally” still gay. Greg’s 75-year-old partner Kevin added being gay “is part of your makeup … we can’t make it disappear because you’ve got dementia, it’s there in front of you.”
Similarly Anne, a 60-year-old lesbian, added that sexual orientation was not “a rinse colour that you put through your hair. It’s fundamental … to who you are and how you relate to people”.
The failure to recognise the constancy of sexual orientation for lesbian and gay people living with dementia was experienced as devaluing and unhelpful.
The importance of respecting gender identity was also emphasised and trans participants expressed concern this was not appreciated by service providers. For example Caren, a 68-year-old trans woman, reflecting on aged care, noted: “If I could not find a place that would allow me to be a woman I would suicide, without a hesitation, because I will never go back to that pretence, to that vigilance, to that exhaustion of trying to keep everybody happy by pretending to be something I’m not.”
Several interviewees outlined the challenges confronting trans people living with dementia. One service provider described how a client sought medical services to transition, whilst experiencing symptoms of dementia. The client soon had difficulty remembering the decision to transition and struggled with the realities of having begun that process. The service provider emphasised the need for medical practitioners to screen for dementia before offering medical interventions.
Other participants described how transphobia and the ignorance of families and service providers affected how gender was expressed. One service provider shared the story of Edna, a woman in her 80s living with dementia, who had transitioned 40 years earlier. She was given an ultimatum by her son to present in residential care as a male or never see her grandchildren again. Edna conceded to her family’s wishes, but the service providers acknowledged that the façade of living as a man and the stress of her family situation negatively impacted Edna’s health and well-being.
Edna’s experience is not unique. Other research has documented how families of origin may capitalise on the vulnerability of trans people living with dementia to enforce their own ideas about gender (Barrett 2008). In these situations service providers are well placed – and need – to advocate for the rights of trans people to live in their affirmed gender.
To achieve this it is important that service providers consider how their personal beliefs about gender impact on the services they provide.
It is also important they shift their focus from trying to ‘understand’ gender identity (and why someone is trans) to supporting a client’s wishes. Such support is likely to require staff education and advocacy with families and co-clients in shared services. It may also involve ensuring strategies for personal care include support to maintain gender appearance (Barrett 2008).
In their own words: interviews reveal fears, challenges
Pauline Crameri, JR Latham, Catherine Barrett and Sally Lambourne present the following three excerpts from their interviews about the experiences of lesbian, gay, bisexual and trans Australians living with dementia.
Nick and George
Nick, 54, is a gay man who lives with George, 63, his partner of 37 years who was diagnosed with younger onset dementia. Nick talks about their fears of homophobia in aged care services:
“The dementia programs are very heterosexual focused, very elderly focused. Accepting in-home care is going to be rather interesting because … are they going to have a problem with us being gay? … We’d like to have someone who is acceptable and frank. We don’t want to have to pussyfoot around and not be our natural selves sort of thing.
“In a lot of services there is sort of that heterosexual kind of bias. If I would eventually need respite or an aged care facility for George, I believe that a lot of them are actually religiously run and there again they cater to the heterosexual who have got kids, grandchildren, things like that. Will George feel comfortable in a place like … if they found out he was gay? I would feel a bit worried about telling them. I think we have been lucky because we’re not outrageously gay, if you know what I mean? We’re not … very camp in our actions and things like that. There’s a lot of people out there that are and they are the ones that are going to find a lot of discrimination I think. Some of these people are going to start coming through with dementia. Services [have] got to start looking at expanding to include gay people.”
Lidia and Val
Lidia is 47, and her partner Val is 65. Lidia was diagnosed three years ago with a rare variant of primary progressive aphasia, which is a form of frontotemporal dementia:
“The experience of dementia is very different for lesbians. We have some gay and lesbian friends in this area and they’re very good friends, and they’re exceptional in the way they deal with Val. They understand what’s going on and they’re completely there and they assist her, they support her, but they’d never take over.
“However, some of her lesbian friends can’t deal with it. They just can’t. It’s such a shock. … We … don’t have anyone who can come or who has offered to come regularly. When things are hard, what would have helped me enormously would have been to have someone I could call and talk to. And if that person were LGBTI, even if it were a gay man, I would find that easier than talking with someone who assumes the family background. Those issues are exacerbated, as we know, for LGBTI people living in regional areas who, generally speaking, encounter a lot of homophobia.
“I worry about LGBTI people who live alone. Who is their advocate, you know? I really don’t know how LGBTI people living alone, particularly living alone in regional areas without at least some LGBTI people around them, would be able to die in dignity. I really don’t. … it breaks my heart. They are terribly vulnerable. Terribly.”
Edna transitioned from male to female in the 1970s, is now in her 80s and is living with dementia. When Edna was admitted to an aged care facility she presented as a man called Harvey. Edna’s story was shared by a service provider:
“We really didn’t know a lot about this gentleman before he came in. We found out on the paperwork when he came in. One of the staff went to assist him and got a terrible shock … I’m saying ‘him’ because that’s the way he’s living at the moment. And when the nurse was toileting him she noticed that his anatomy was different.
“The children were only early teens at the time [of Edna’s transition], and they’re having problems adjusting – still. The reason why this gentleman, Harvey, is living as a male here is because the son said, ‘If you don’t – if you embarrass us and you don’t dress like a man, you won’t see any grandchildren’. Not that the son brings his children in much, but that threat was made. And there’s issues over money and that’s very distressing [for Edna]. So you can see this time, and what the family has been through, is impacting on this poor man who can’t be who he wants to be. And that’s the biggest – I think that’s the saddest thing. Prior to him coming – or being admitted here, he was living as a female.
“For Harvey, he’s a woman not a man. I don’t think he just woke up one morning and said, ‘I want to be a female’ so he’s probably had this all his life. He’s a huggy-feely sort of person. When he’s distressed it breaks down that façade that he has to put on here [of pretending to be a man].”
Discrimination and the onus of responsibility
Many participants described their historical experiences of discrimination and an ongoing sense of pressure to conform to normative views of sexuality and gender. For example, Kevin described how he and his partner Greg have “never been the type to flaunt our sexuality … when I see people that do I would think I’d say to myself, ‘I’m glad I’m not them. … I am glad because I don’t want myself exploited. … when you flaunt you are embarrassing yourself”.
Others added that their sexual orientation or gender identity might be confronting for service providers and felt it was their responsibility to avoid this upset and to educate service providers about the needs and experiences of LGBT people.
This sense of pressure to hide sexuality or trans status to avoid discrimination or upsetting others is not a problem faced by the broader community. It may contribute to a reticence on the part of LGBT people to describe their needs, report discrimination or identify services gaps (Barrett et al 2014a).
It is important that service providers understand LGBT histories and the belief of some LGBT people that their sexual orientation and gender identity should be withheld. With this understanding, service providers are well placed to communicate a message of welcome and safety to LGBT people living with dementia.
It is also important they consider collective LGBT histories when constructing life histories or inviting LGBT people to participate in memory or reminiscence groups. For some LGBT people with dementia, being asked about their experiences growing up, their family and early relationships precipitates anxiety and may be re-traumatising (Barrett et al, forthcoming).
Asking questions about historical experiences without understanding the broad historical context risks missing opportunities to support LGBT people living with dementia and communicate the message that their sexuality, gender, history and life stories are valued and respected.
The nature and importance of disclosure
Most participants said that they carefully considered whether or how to disclose their sexual orientation or trans status to service providers and/or the broader community. For some, this information was not shared until a rapport was developed and they felt safe. Additionally, several trans participants identified only as male or female, rather than as ‘trans’, and chose not to disclose their gender history because they wanted their affirmed gender to be recognised and respected.
These carefully considered decisions about disclosure relied on the individual having a significant level of cognitive function and physical independence. The experience of dementia resulted in a number of participants inadvertently disclosing their sexual orientation.
Others reported that the physical reliance on service providers meant their bodies or same-sex relationships were revealed.
The fear of disclosing sexual orientation and gender identity were associated with significant stress for the person living with dementia, as well as their partner.
The nature of disclosure was also emphasised by interviewees. Disclosure involved more than providers simply ‘ticking’ a sexuality or gender category checklist.
Where services provided safe spaces for LGBT people living with dementia, some participants had been willing to fully disclose their sexual orientation or gender identity and service needs. Providers need to understand this distinction in order to develop LGBT-inclusive services and promote full disclosure of needs.
Recognition of intimate relationships
Intimate relationships had particular significance in the lives of LGBT people living with dementia, providing a protective space against discrimination and one of the few places where diversity was affirmed. Despite this importance, some participants described how their family of origin still did not recognise their intimate relationship. This lack of recognition was experienced as hurtful and devaluing of sexual orientation.
The refuge provided by intimate relationships, coupled with the fear of discrimination, meant that some participants relied heavily on their intimate partner for care. For example Dale, a 72-year-old lesbian, reported that her long-term partner’s care needs were almost impossible for her to manage at home. She described how her partner “died before it was impossible. It got very close though”. Dale cared for her partner at home because her partner feared discrimination if she entered an aged care facility.
Some of the challenges encountered by intimate partners were eased by their participation in carers’ support groups where they felt their diversity was embraced. For example, Anne described that in her carers’ support group there was “an acceptance and a genuine warmth … that seems to transcend sexuality”.
Others, however, described feeling like an outsider in groups where the focus was exclusively on the experiences of heterosexual carers. For example Richard, a 75-year-old gay man, described how he felt like “a fish out of water” because he was gay. Consequently, he stopped attending the carers’ group.
The importance of information on LGBT inclusivity for carer support groups was also highlighted by participants, who described how other members of their group sought information from them about LGBT identities. While this was done in a convivial way, it highlights an opportunity to provide LGBT information to carer support groups to remove this responsibility from the intimate partners of LGBT people living with dementia.
Most intimate partners believed they provided a vital advocacy role for their partner, particularly in challenging homophobia. Indeed, several participants expressed concern for LGBT people living with dementia who did not have a partner to advocate on their behalf.
Service providers who understand the experiences of LGBT people living with dementia are well placed to advocate for their rights.
Participants recounted enormous grief associated with the death of their partner, but felt this grief was not recognised. They described the importance of service providers respecting their intimate relationships and the need for grief support after the death of a partner.
The importance of connection to other LGBT people was raised in most interviews. As one participant, Kevin, noted, these connections were considered important because “you can freely be yourself … when you are mixing with your own type … you speak freer”.
Similarly Nick, a 54-year-old gay man, noted that in caring for his partner with dementia “the biggest thing is … isolation from the gay community”. Nick added that, “it would be really nice to get some real gay friends … in the same sort of situation … somebody that you can really discuss things with and see how you are going.”
While social networks were considered important, they were also reported to be limited for LGBT people living with dementia, as Anne explained: “… there’s stigma associated with dementia and …. There was certainly stigma associated with being lesbian and gay. … there are many people who have a reserve or a cautiousness or they don’t understand us, a discomfort, that’s not expressed. … it’s a double whammy.”
While social connections are likely to be important to many people living with dementia, decreasing social connections for LGBT people meant the loss of safe and affirming spaces.
There is a need to engage LGBT communities in providing social support to community members who are living with dementia.
Substitute decision making
Some participants described conflict and violation of rights when LGBT people with dementia were unable to articulate their wishes and family of origin intervened.
For example, a number of intimate partners reported their application for legal or medical power of attorney was contested by family of origin. In each case the legal rights of intimate partners were upheld, but the conflict caused significant distress for intimate partners at a time when they were under-resourced.
In one such example, Dale described how her partner’s children “turned their backs” on their mother, but when she was diagnosed with dementia did not want Dale to be “in control” of decisions.
“They ended up taking me to the Guardianship Tribunal accusing me of maltreating her because they wanted control,” Dale said. “They wanted her put in a nursing home and I was asking for access to her money to fix up things at home so that she’d be safe. … the fact is they didn’t give a fig but they’re all standing in line now waiting for the will to be read.”
This conflict presented a particular challenge for Dale who had promised to care for her partner at home to alleviate her partner’s fears of homophobia in aged care.
Conflict was also reported in relation to trans people who lost the capacity to educate service providers and family members about their identity and wishes.
It is important that service providers respect LGBT people’s intimate relationships and recognise the importance of their relationships and needs being respected when they are no longer able to make decisions for themselves.
This research represents the first glimpses into the lives of LGBT Australians living with dementia. It makes a significant contribution towards achieving the National LGBTI Ageing and Aged Care Strategy’s goal to empower LGBTI people as experts to be consulted about their own ageing – in particular their experience of dementia.
The research produced vivid accounts of experiences, needs and fears that have not previously been adequately understood or addressed. The research has been used to develop a suite of education resources to assist providers to create LGBT-inclusive dementia services.
A group of LGBT Australians living with dementia is officially launching these resources on 27 October at the 2015 National LGBTI Ageing and Aged Care Conference in Melbourne, hosted by Val’s Café*.
The resources are: We are still gay… an evidence-based guide to understanding and meeting the needs of lesbian, gay, bisexual and trans Australians living with dementia; a set of case study narratives; a PowerPoint resource for Alzheimer’s Australia staff and those providing LGBTI education for aged care services; and a photo project capturing a day in the life of a lesbian with younger onset dementia.
The resources are freely available from the Val’s Café* website at: http://www.valscafe.org.au/ The four-page resource We are still gay… an evidence-based guide to understanding and meeting the needs of lesbian, gay, bisexual and trans Australians living with dementia is also available in the October/November 2015 issue of AJDC.
*Val’s Café is part of the Sexual Health and Ageing program at La Trobe University’s Australian Research Centre in Sex, Health and Society. It was established in 2009 as a project to improve the health and well-being of older LGBTI people. It develops evidence-based resources and information and builds the capacity of the aged care sector to be LGBTI inclusive.
The research described in this article was funded through an Aged Care Service Improvement and Healthy Ageing grant provided by the Australian Government Department of Social Services.
Dr Catherine Barrett is Senior Research Fellow and Chief Investigator/Coordinator of the Sexual Health and Ageing Program, Australian Research Centre in Sex, Health and Society, La Trobe University; Pauline Crameri is the program’s Research and Community Liaison Officer, and Co-ordinator, Val’s Café, La Trobe University; Sally Lambourne is Senior Project Manager, Alzheimer’s Australia NSW; JR Latham is Project Coordinator, Intersex and Trans Ageing Projects, Val’s Café, La Trobe University. To follow up on this article, contact Dr Catherine Barrett at: C.Barrett@latrobe.edu.au
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